P-076: HEALTH SEEKING BEHAVIORS RELATED TO SICKLE CELL DISEASE IN KOIDU, KONO DISTRICT, SIERRA LEONE
Authors: IBEMERE S., JAJA C., SHAMBLEY-EBRON D., GIBSON R.
Journal: HemaSphere (2022)

Purpose: Although nearly 80% of all sickle cell disease (SCD) births occur in sub-Saharan Africa (SSA) and nearly 90% of children diagnosed with SCD will die from the condition, efforts to improve health outcomes in this context have been riddled with implementation limitations. Aside from the geo-political and economic challenges that have historically and currently undermine the capacity to deliver healthcare particularly in Sierra Leone, poor understanding of cultural context has also been implicated. To increase knowledge of the cultural elements which could improve SCD interventions, this study aimed to describe cultural factors which influence SCD related health seeking behavior in Kono District, Sierra Leone. Materials and methods: Ethnography was used to explore the cultural influences of SCD care. Participant observation and semi-structured interviews revealed cultural values, beliefs, and practices of professional and family caregivers as well as those with SCD. Participants included persons with SCD, professional and familial caregivers, and community informants. Field observations were conducted in participant homes and healthcare facilities. Semi-structured interviews were conducted with 27 participants. Constant comparative analysis was used to generate codes, categories, and themes that explained cultural influences on health-seeking behavior in this community. Results: Participants explained recognizing overt symptoms, then seeking family and community support and advice (cultural values) on how to treat these symptoms based on supernatural, traditional, and/or biomedical beliefs about disease (cultural beliefs, Figure 1). This process led to defining the illness and making a treatment decision according to one’s belief system. Participants described illness as: 1. a community and family burden that led to family division and loss of economic productivity or 2. an opportunity for increased support and collectivism. In describing their health seeking behaviors, participants described a process of trial and error when accessing care in traditional and biomedical practices. Participants then explained returning to family and community support systems to gather new ideas for symptom treatment informed by their cultural beliefs following poor care experiences or after returning to their communities is worse health. Several participants attributed their poor health care experiences to a lack of knowledge about SCD and its treatment. Many participants living with SCD and their family caregivers recounted years of seeking treatment in this manner until receiving a diagnosis. All participants interviewed suggested the path which integrated aspects of traditional, spiritual, and biomedical practices has been the most successful (The Hybrid Way). Conclusion: These findings provide an opportunity for researchers and clinicians to operate within the cultural systems of this community rather than outside of it. Belief and value systems were linked to specific cultural practices aimed at providing healing for those with SCD. Many cultural practices led to interactions with leaders within a belief system; these leaders may or may not have had exposure to SCD treatment and management. Therefore, the development of educational and training interventions for religious leaders, traditional medicine practitioners, and medical personnel is imperative. To accomplish this, implementation science community-based research techniques are suggested to ensure sustainability of such interventions and to meet the needs of the community.Patterns of Health Seeking Behavior for SCD Care The authors do not declare any conflict of interest